What is MDA? How do I find my MDA office or clinic? How can I receive MDA services? What neuromuscular diseases are in MDA’s program? How does MDA raise and spend money? How does MDA support neuromuscular disease research? What are MDA’s health care services programs?

How can I receive MDA publications? What is MDA’s advocacy program? What do MDA’s community programs do? How can I get involved in helping MDA? What are some other ways to support MDA’s lifesaving mission? Whom should I contact to get official information about MDA and its events and programs?

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1. What is MDA?
MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.

 

2. How do I find my MDA office or clinic?
To locate your closest MDA office or clinic, go to the ZIP code locator, or call (800) 572-1717.

 

3. How can I receive MDA services?
Individuals with a neuromuscular disease in MDA’s program can register with the Association through their local MDA office. Registration, which is free, is necessary for participation in MDA services and programs like clinic and summer camp, and to receive Quest and the MDA/ALS Newsmagazine.

 

4. What neuromuscular diseases are in MDA’s program?
MDA is dedicated to finding treatments and cures for more than 40 neuromuscular diseases that cause progressive muscle weakness. To see a list of diseases and learn more about each, visit the disease directory.

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5. How does MDA raise and spend money?
MDA is funded almost entirely by individual private contributions and cooperating organizations.

The Association dedicates 77 cents of every dollar it spends directly to research, services and education. View the MDA Annual Report online for more information, including a complete financial report.

 

6. How does MDA support neuromuscular disease research?
As the world’s largest private-sector supporter of neuromuscular disease research, MDA annually funds some 300 research projects, spearheaded by scientists worldwide.

MDA approves new grants twice a year; see Grants at a Glance for the latest round. In addition, MDA’s translational research program represents an innovative way to fund research that’s designed to move new drug targets into the clinic as rapidly and efficiently as possible. MDA training grants attract new talent into the area of neuromuscular research.

MDA also seeks to accelerate therapy development by sponsoring national and international scientific meetings about disease research (such as 2012 MDA Clinical Conference), and through collaborative efforts with federal agencies and other organizations in the U.S. and around the world.

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7. What are MDA’s health care services programs?
Every year, tens of thousands of people visit MDA's nationwide network of 200 clinics, including 42 MDA/ALS centers, where they receive expert care from muscle disease specialists. MDA also provides annual occupational, physical, respiratory or speech therapy consultations.

Each year, MDA sends some 3,500 youngsters with muscular dystrophy to accessible MDA summer camps across the country, at a cost to MDA of $800 per camper. There is no charge to families.

The Association also:

• assists with the cost of repairs and helps locate durable medical equipment for those it serves;
• provides thousands of free flu vaccines;
• conducts ongoing public health education programs through webinars, educational speakers, seminars, videos and newsletters;
• facilitates meetings of nearly 200 support groups around the nation;
• provides online support services through the online social networks Facebook and Twitter; and helps individuals mobilize a personal support network through myMuscleTeam, a program that helps recruit and coordinate in-home help; and
• convenes conferences for MDA clinic directors and their associates.

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8. How can I receive MDA publications?

MDA publishes the award-winning quarterly print magazine Quest, which is available online with searchable archives. The magazine carries detailed articles about current research, medical care, helpful products, social and family issues, inspiring individuals and the concerns of daily living with a neuromuscular disease.

Individuals who are registered with MDA are mailed Quest free of charge. A Quest subscription also is available to those not registered with the Association for a fee.

As an added bonus, Quest Magazine Online offers all content that's available in the print magazine, as well as special online-only features and articles related to stories in the print magazine. And be sure to check out the site's Quest News section, which features breaking research news, legislative updates, profiles of people living with neuromuscular disease and much more.

In addition, MDA publishes an online-only magazine, the MDA/ALS Newsmagazine, which is regularly updated with ALS research news, features and blogs from those affected by amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease).

Anyone may sign up to receive free monthly email summaries of MDA online news articles covering research, health care news and interesting individuals living with neuromuscular disease.

Other MDA publications include booklets and guides about research, health care, caregiving and daily living. Publications are available free online; many also are available in Spanish.

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9. What is MDA’s advocacy program?
MDA’s national advocacy office in Washington, D.C., works year-round to keep the needs of the MDA community in the minds of policymakers who craft legislation, research priorities and health policy. MDA Advocates marshal the strength of the MDA community to inform and educate legislators on issues of importance.

Through collaborative efforts with federal agencies and other organizations, MDA is working to both accelerate therapy development and expand resources for families affected by muscle disease.

The MDA Transitions Program and Transitions Center are focused on empowering a new generation of young adults who — thanks to medical and technological advances — are living long into adulthood with “childhood” neuromuscular diseases.

In addition, MDA's National Task Force on Public Awareness provides insight and guidance to the Association about policy issues and activities of interest and importance to people with disabilities. The group consists of adults who are leaders in their communities and are affected by disorders in MDA's program.

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10. What do MDA’s community programs do?
MDA’s 200 local offices provide valuable practical information and essential services.

MDA spokespeople represent MDA at events across the country, including fundraisers and MDA sponsor functions. Through public appearances, speaking engagements, media interviews and public service announcements, they also help raise awareness of MDA’s vital research and support services.

 

11. How can I get involved in helping MDA?
Volunteers are the backbone of the Association's programs, helping with summer camp, support groups, seminars and many other programs. MDA special events are a fun way to raise vital funds for the battle against neuromuscular diseases. For more information about getting involved with MDA, please contact your local MDA representative.

And of course, please feel free to make a donation right now!

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12. What are some other ways to support MDA’s lifesaving mission?
A vital part of MDA’s financial support comes from strong partnerships — some decades old — with local, regional and national sponsors. For more information about becoming a corporate sponsor, please contact Executive Vice President of Business Development Kevin Moran at (520) 529-2000 or kmoran@mdausa.org.

Those interested in making special gifts to MDA through planned giving vehicles, including bequests, annuities and trusts, should contact MDA’s Special Gifts & Philanthropy department at (800) 223-6011, or email Vice President of Special Gifts Rick Brown at rbrown@mdausa.org.

In addition, MDA also offers a time-saving monthly giving program in which participants designate a pledge that automatically is charged to a credit/debit card every month.

To learn more about other ways in which you can assist MDA in the fight against muscle disease, visit MDA’s Help Through Giving page.

MDA needs your help — please support MDA's fight against muscle disease today!

 

13. Whom should I contact to get official information about MDA and its events and programs?
Call MDA Public Relations at (520) 529-5317 or email publicrelations@mdausa.org for media assistance with:

• a local or national story about MDA;
• any of its lifesaving research and treatments;
• a story about an MDA client or our treatment protocols;
• interviews with an expert on any of the diseases in MDA's program;
• an official statement about MDA; and
• general questions about the Association.

Also contact the department for media assistance with stories related to MDA fundraising events, corporate partnerships or special programs, including Shamrocks Against Dystrophy, MDA Lock-Ups, MDA Muscle Walk, Aisles of Smiles and MDA SHOW of STRENGTH™.

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